Women’s Attitudes Toward Invasive and Noninvasive Testing When Facing a High Risk of Fetal Down Syndrome

Key Points Question What are the attitudes and decision making concerning invasive and noninvasive prenatal testing in women at high risk of fetal Down syndrome? Findings In a survey study of 2436 pregnant women in France participating in a randomized clinical trial, 4 clusters were identified with different attitudes toward risk taking and extent of information seeking. Decision making was in line with attitudes, and clinical and socioeconomic factors were likely associated with the attitudes identified. Meaning Aversion to ambiguity generated by incomplete information from noninvasive testing as well as aversion to risk of pregnancy loss due to invasive testing played a major role in shaping attitudes and decision making; therefore, pregnant women should receive extensive information on targeted abnormalities by both tests to aid informed decision making.


DETECTION OF TRISOMY 21 BY BLOOD TEST
To find out the risk of trisomy 21 more precisely, a blood test has been proposed to you as to all pregnant women, in addition to ultrasound. 9. Who was looking after your pregnancy at the time you were tested for Trisomy 21 by blood test?  The same doctor (midwife) as for the 1st trimester ultrasound examination.  A general practioner  A gynecologist or an obstetrician in the private sector  An obstetrician within a maternity unit  A midwife within a maternity unit 10. Did you decide to do the test before the doctor (the midwife) suggested it?  YES  No, I did not think about it until the doctor (the midwife) suggested it  I did not know that trisomy 21 could be tested by a blood test 11. Did the doctor or midwife give you an explanation about the test?  Extensive explanations  Few explanations  No explanation 12. Would you have liked more explanations ?  YES  NO 13. How did the doctor (the midwife) advise you about the ultrasound examination ?  He (she) told me what to do  He (she) gave me his opinion and told me to decide  He (she) told me that it was up to me to decide and that he (she) did not have to give his opinion 14. How did you decide to do the ultrasound?  I let the doctor (the midwife) decide because he (she) knows better than me what to do  I decided with the help of the doctor (the midwife)  I decided without the help of the doctor (the midwife)

Was it easy or difficult for you to decide to do the ultrasound examination ?
 It was an easy decision  It was a difficult decision  I did not feel like I was making a decision

RESULTS OF DOWN SYNDROME SCREENING
The result of trisomy 21 screening takes into account both the ultrasound, the blood test and your age. Pregnant women are often anxious when the screening result is announced. The following questions may help you identify points for which you would like more explanations from your doctor (midwife).

YOUR ATTITUDE TOWARDS THE DIAGNOSTIC EXAMINATION
The diagnostic test makes it possible to know with CERTAINTY if there is a trisomy 21 or another anomaly of the chromosomes . To do the test, a sample of the young placenta (trophoblast biopsy) or amniotic fluid (amniocentesis) has to be obtained by introducing a needle into the uterus. Because of this procedure, there is a risk of miscarriage that occurs in about 1 in every 100 women. The following questions may help you make the decisions that suit you best. This new test does not make it possible to know if there are other chromosomal anomalies that the trisomy 21. To know it, it is necessary to perform the diagnostic examination. These other abnormalities are very infrequent but some of them may require specific medical management.

What do you think is the worst?
 Take a risk of miscarriage that occurs in about 1 in 100 women  No information on chromosomal abnormalities other than trisomy 21 in about 1 in 100 women

What do you think is best for you?
 Take a risk of miscarriage (in about 1 in every 100 women) and have some information on ALL chromosomal abnormalities  DO NOT take any risks and have information ALMOST CERTAIN about trisomy 21 ONLY 25. Imagine that you have a choice of the following three options. Which one do you prefer?  Option 1: Refuse to do neither the new test nor the diagnostic test  Option 2: Do the new test  Option 3: Do the diagnostic examination